The question is often asked, "What is normal?" I haven't got a clue, because I know that I am not, and this has played havoc with me in many ways. I have seen normal and been to school with it, so the example of it has always been present. Normalcy, at certain times of one’s life, is very important. As a human being, I, like everyone else, am governed by hormones, and mine have only ever been present to do those things that govern my physical status. Even here they seem to have been present in only just sufficient numbers. They control and govern the physical and emotional makeup of us all and are responsible for the way in which we develop both sexually and physically.
My development in both areas has been severely affected. Having suffered brain damage and its after-effects, I have done something that most people manage only in old age: I have shrunk. I am not talking here sexually – that would appear to have either grown or remained the same!
Due to the head injury, I badly damaged my pituitary gland, which is known as the master gland, and this resulted in many of the other glands not knowing how to go about their life. They either sat there and did nothing, or did it to a very limited degree. This was the reason for my suffering diabetes incipidus for some time after my accident and also my loss of appetite to the extent that I went down to a weight that would not have been remarkable in a starving country. Indeed to be weighed at just over four stone and measuring in at near five foot seven is rather like taking the vital statistics of a skeleton. I recall at the time being quite happy as a skeleton and not in the least hungry. That was the result of the damaged hormone glands. One of the things that these glands monitor is the development at puberty, and consequently they play a major role in behaviour. Prior to my accident, I was a normal type kid at school and was surrounded by girls, some of whom I found most attractive. I was fourteen and just coming to a realisation that God had placed these creatures on earth to stimulate more than a passing interest in life.
This period we call adolescence is one enjoyed by most people, and I, too, was set to enjoy it like every other 'normal' person. But as stated, I am very far from the normal. My accident occurred at the age of fourteen when most of us are just entering puberty and those hormones are starting to moan. My development was, to this stage, quite unremarkable and normal so to have it so rudely interrupted came as a major shock. My classmates were often seen in the company of these girls and I was with them at lunch breaks and study periods as well. This is the time when we start to forge friendships, which usually last for some considerable time. That is what I referred to as being 'normal'. It is this part of adolescence which was totally denied me. I was knocked unconscious, suffered major brain damage and was left in a coma for six weeks, only months after my fourteenth birthday. It was not only the physical setback, but also the emotional, which robbed me of my adolescence. I guess it could be said that I sublimated – went from childhood to adulthood without first going through a period of depravity. I do not know what this period is like for most females – I can only guess – but for a male it is very difficult. How can it be expected that a normal life will be enjoyed if some critical part of it has been taken out? It is like a building – there must be a foundation and adequate reinforcing in the lower floors to sustain the upper floors and superstructure. I know all this, but it is an intelligent rationalisation, not something through which I have lived.
I have used the word sex where perhaps the word gender would be more appropriate. Sex I would like to try and confine to the physical act as divorced from the emotional and intimate concourse, which we call friendship, of two people of differing gender. In terms of quantifying gender, how many are there? I think there must be three: male, female and "those others". I seem to belong in the group with "those others". But we are not sexless and amorphous, without shape and feelings of physical need. In some cases we are more in need than most others in society. Certainly more in need of understanding and consideration, and it is to that end I submit this writeup, for both catharsis and also to attempt to enlighten any who might read it.
Those hormones were present in my system, but not in sufficient quantity to do a complete job, it would seem. My physical development was so shocked by the accident that it stopped where it was with no thought of getting up and running again. I find myself now, at the age of forty-five, with rather thin arms and legs, the same stick-like buggers I had at fourteen, with shoulders that do not separate them by very much. I am now fit and very healthy but do not have the arms and legs normally associated with an adult male. Since coming out of hospital I have discovered that hormone replacement therapy is often used in such cases as mine but for whatever reason was never given to me. There is now, of course, no way of knowing if it might have helped me to develop along different lines had it been employed.
The emotional and sexual development however seems to have taken a normal route in so far as I am a functioning and red-blooded specimen of male desire just like the next guy. I enjoy the physical contact and function normally. This is not the problem about which I want to write. It is the more deeply felt and less appreciated emotional needs, deprivations and inherent inadequacies in the lives of many disabled people and society in general. We certainly live in a class-structured society. The classes are not just economic but, for those of us who have had some form of catastrophe, it's very much a 'them and us' mentality, which permeates all.
I came quickly to an appreciation of this fact of my 'new' life, and determined not to be one of them, but to continue life as though nothing had happened. Due, though, to the aforementioned behavioural changes I am definitely not one of the normal citizens of society, only an aspirant. That is the desire of many of us and also our disappointment. I communicate this from the point of view of someone who has suffered acquired brain injury (ABI), which implies in most cases that we started out as ordinary normal persons. Our future was like most others in that we had no illusions about the direction of life and would go to school, get a job, live in a box in suburbia, generate two point four ruggies and pay taxes. This is now the illusion; life has been completely redirected. The physical is only now a small part of what is wrong. We are emotionally crippled in many cases, but unlike any other form of cripple, we are thought of as something that might 'get better', often without any form of understanding or help.
Assistance is extremely difficult to give. I know that because the only person who really knows how we feel and what is going on is ourselves, and these things are almost impossible to articulate. Let’s look at a couple of case studies. My own is interesting because I think I understand it and can appreciate some of the complexities. Apart from the physical limitations I have some marked emotional shortcomings which seem to mark me apart. When in company I tend to get too close to people and this I often ascribe to my poor hearing. I am deaf in one ear and need to be addressed from the right to be able to hear, especially in a room where there is other noise. I also look people directly in the eye and this upsets many. This is due I think to my limited vision and also that I like others to look at me when they are speaking. But a large part of my emotional makeup has been busted (medical term) and one of those things of which most people are aware is something called personal space. My personal space is very small and I do not seem to be able to appreciate that other people have a much larger requirement. Invasion of this personal space is a very threatening thing, especially for a complete stranger. When I am introduced to someone and immediately get in their face, they have reason to feel threatened. I know this, but the knowledge does not seem to overcome my lack of skills in interpersonal relations. Having a small personal space and never feeling threatened by any one or anything does not help me either. That is a thumbnail sketch of some of my behaviour traits and now I would like to look at some other traits.
The brain is such an enormous thing, much bigger than the little round blob on our shoulders that contains it, and there is a vast amount of damage which can be done to it without ever doing the same thing twice. As a consequence, no two people will learn to cope using the same strategies, and behaviour patterns are as varied as appearances. Many ABI victims talk loudly – often even shout – and they use language which is not appropriate. To say what you think and to do so in an acceptable way and time is one thing that often is lost to the brain-damaged. I was certainly like that myself, and have since learned to moderate my behaviour, though I sometimes revert to the old techniques and become again the threatening and less pleasant person. It is often the fact of being out of tune with what is happening around us that makes our behaviour inappropriate. Things said in a different way and in another setting would be okay. Inhibitions are removed and never recognised by many of us. This is directly attributable to brain damage and must be accepted and lived with by us and those around us. The part of the brain which controls this behaviour is principally the frontal lobe. It says that enough is enough and stops further excesses. It is due to this area that people who drink alcohol know when they have had enough and they stop. Those of us who have damaged this area might have lost this capacity completely with regard to alcohol and also social niceties. While being hard to understand, these parts of our behaviour must be accepted and sometimes ignored by those around us but of course gentle guidance should be given. Repetition is as good a teacher of things behavioural as it is for the physical.
This brings to mind another trait, which is sometimes found and not understood. Everyone, I think, has at some stage in their lives been guilty of pushing their own barrow. The brain-damaged do sometimes make outrageous claims and appear to boast. This is seen as just that – loudness and boasting – but more usually it is likely to be a need for acceptance in a group of normal people or the loss of inhibition. I can cite one such person who is expecting a large payout in compensation and is constantly offering cigarettes as if they cost nothing. He is also very keen to shout everyone coffee for which he pays. This is not just generosity but a call for help and friendship. He might not get the payout and then he will need genuine friends whom I think he will then discover are very hard to find. Social niceties, graces and subtleties are not this person’s fortes. He is genuine and friendly, but also very tiring.
I like to look at myself as an invalid, not as being invalid; indeed, I believe that I have something of value to give and the privilege to expect something of value in return. Further to this statement, I do not believe that I am alone. The human psyche demands certain traits to be observed in others so that we may respond to them and they must be structured in a particular way for us to recognise and respond to them appropriately. Perhaps it is this appropriateness which is most in question (or should be in question), not the people involved.